Favourite Quote: “For years I’d been so okay with dying. I’ve always known it would happen. It’s been this inevitable thing that I’ve lived with forever, this awareness that I would die long before Abby and my parents. I was never, ever ready to grieve, though.”

The release of the Five Feet Apart cinematic trailer caused a dash of controversy in the online CF community – you can read my thoughts here – so I have no doubt that the book will also cause some people to tear at their hair.

Five Feet Apart

This isn’t a #ourvoices story – but it’s important to note that there was a great deal of consultation, including that of Claire Wineland, and that shines through in the writing.

As always in a fictional book that includes a character with CF, some things niggled at me.

  • First and foremost – although some transplant centres will not accept people who culture B. Cepacia there are those which do and people who have cultured  B. Cepacia CAN have successful transplant outcomes. I feel inclined to give this one a pass – because that would be tricky to explain and it’s a much better storytelling technique to draw a line in the sand and raise the stakes significantly.
  • I have a slight problem with Barb disclosing to Stella that Will has B. Cepacia (significant patient confidentiality breach there) however the point I raised above about storytelling techniques also addresses this problem.
  • Aside from the obvious Med cart rearranging issues, Stella is initially portrayed as a  guideline freak. At that point, she doesn’t know Will enough to bend the rules for him. There is NO WAY she would go into Will’s ‘B. Cepacia laden room’, makeshift hazmat suit or not. FULL STOP.
  • Stella and Will using the gym together also raised a red flag as something that would never happen in Australia. Here, we get our exercise equipment in our hospital room for the duration of the stay. I wondered briefly if the US is different, but can’t see any hospital guidelines ever being okay with this.
  • Will, sneaking into pre-op. Yes, it made for a good story but seriously WTF? I explored/poked my nose into many areas of the hospital that are off limits for patients, but this incursion would take more than a small miracle to pull off.
  • Stella in the pool – surely she had either a PICC line or port. And what about her infected G-tube?!!

As a side observation, and it’s something I see in movies generally, not only with depictions of people with CF, what’s with carrying oxygen bottles on your back? Those things are HEAVY. I got exhausted wheeling mine. Carrying my handbag, which only weighed about 5% of the weight of an oxygen bottle was exhausting enough.

On the surface, they sound like a lot of niggles – but compared to other books that get CF life very, very wrong, it’s not. And of far more importance than niggly technical medical details that can change from person to person or country to country the emotions and characteristics of living with CF were spot on.

The descriptions of the ward and hospital corridor hijinks took me straight back to the early ’90s and B Block at Charlie’s, (except our technology back then was far less sophisticated and involved calling each other’s rooms on the good old corded phones). To nights that were spent roaming dark hospital corridors, filled with shenanigans and practical jokes that we played on our fellow inpatients. Both Barb and Julie reminded me so much of the B Block nurses – like Barb and Julie in the story, the B Block nurses didn’t simply nurse us they became part of our lives.

Hospital Hijinks

This story perfectly some of the experiences and emotions that come hand in hand with living a life with CF. And while not every nasty little symptom of CF was explored, the ones that were gelled for me. Although never on a rooftop, I can’t even begin to count the number of times I’ve coughed until my vision blurred with black edges, knowing that if I can’t drag just a little more air into my lungs, I’m going to pass out.

Been There, Done That!!!

Of a more general story nature, yes, Will is the bad guy and Stella is the goody-two-shoes with her to-do lists, and yes it’s a love story about two sick teenagers. And yes they are far more physically active dashing around the hospital than any person with less than 40% lung function should be.

Trope, trope, trope.

Tropes may not be for everyone, but sometimes they serve a purpose. Some readers like to know the type of story they are investing in. Many storytellers display chronically ill people dashing about here and there because frankly, no-one wants to read (or watch) someone who is chronically ill slowly climbing stairs one solitary step at a time.  It might be more realistic to depict CF this way, but the primary objective of this story is to entertain first, educate second.

Being frank – this isn’t a masterpiece of literary writing, and that’s okay. The literary genre isn’t everyone’s cup of tea, and even those who like deep and meaningful stories sometimes like to lose themselves in an easy emotional heart-tugging read. This story is exactly what it’s trope promises it will be – an emotional read designed to tug on the heartstrings.

Not everyone in the CF community is going to agree with me, especially those who view the cross-infection guidelines as a rigid, inflexible rule – but this is the first fictional story I’ve read with characters with CF that got more right than wrong. As both a writer and someone with CF, I can see why some of the realities were blurred to create a better story for the reader – so that makes Five Feet Apart a win from me – with bonus points for not going for the predictable ending.

It was so hard to choose my favourite quote – so  I’d like to indulge in two more:

“Cystic fibrosis will steal no more from me.”

and

“Those lungs are a chance for a real life”

“New lungs? Five years, Will. That’s the shelf life of them” …

“Five years is a lifetime to people like us, Stella.” I said.

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